New UK charity to join forces with pharma

A new charity will team up with leading UK pharma firms to raise awareness about immune deficiency diseases

The charity, called UKPIPS (United Kingdom Primary Immune-deficiency Patient Support), will join forces with some of the leading UK pharma companies to discuss the support, treatment and diagnosis of people living with a Primary Antibody Deficiency (PAD), and other Primary Immune Deficiencies (PID).

Both groups will discuss these issues at meeting on 26 November at the Hilton Birmingham Metropole. The companies who have already signed up include: Baxter, Biotest UK, BPL, CSL Behring, Grifols, and Octapharma.

A primary antibody deficiency is where the immune system cannot make antibodies and means that something like the common cold or influenza, which a person with a normal functioning immune system will eventually shake off, can seriously cause damage to a person with a PAD.

The problem causing the inability of the immune system to make antibodies is not the same in every person who has an antibody deficiency, which often delays diagnosis. The two groups hope that by coming together, they can raise greater awareness about these conditions, and help patients gain access to treatment.

Liz Macartney, co-ordinator and a trustee of UKPIPS, said: “There is currently little support or information for people living with a primary antibody deficiency in the UK, with many people often suffering from extreme ill health for a number of years.

“Typically, people living with a primary antibody deficiency go undiagnosed for five years. This delay in receiving appropriate treatment leads to irreversible damage of the lungs and other organs. On a psychological level, it can have devastating effects on their relationships, work life and day to day living.

“Once diagnosed, while a PAD is not curable, it can be managed to a certain extent by medications and, in some cases, bi-monthly immunoglobulin transfusions (which give people a dose of antibodies from healthy people).

“We are so pleased that some of the major pharma companies are attending our meeting to discuss the work of UKPIPS in raising awareness of these diseases and in supporting those who live with a PAD.”